CAPOIRA Informe resumido

Final Report Summary - CAPOIRA (CApacity-building for Patient Organisations to participate in Research Activities)

The CAPOIRA project has reached all of the milestones and achieved all of the deliverables set out in the contract signed with DG Research of the European Commission (EC) in the context of the Sixth Framework Programme (FP6). As an experimental project it has shown that the pilot capacity building sessions on clinical trial protocols developed by Eurordis and Inserm in France can be successfully extended to other European countries. Through the European workshop on 'Gaining access to rare disease research resources' it was possible to identify what the rare disease patient community needs in terms of research activities while at the same time presenting them with key tools that already exist in the area of rare disease research at European level.

Apart from the technical aspects of reaching milestones and delivering deliverables, what has CAPOIRA brought to the rare disease world? Considering the relatively limited budget it has had an impressive impact. Six events have taken place with a total of 347 participants. An innovative model at national level has been turned into an innovative model at European level. However, it is obvious that the present approach will have to be adjusted before it can be spread to other European countries.

Although the employed model was sufficient for the needs of a pilot session, the 'way forward' document, annex 13 highlights how we believe the events can be organised in a more efficient manner in the future. The evaluation of the clinical trial protocol sessions clearly shows that the patients have at the very least been familiarised with the evidence-based medicine frame and the concepts and vocabulary of clinical research, this has empowered them as patient representatives. By keeping their details in a database, we can foster their potential active, confident and informed participation in clinical trials, and more particularly for rare diseases clinical trials, orphan drugs and paediatric drugs.